Summary of Lupus Congress 2017 – DAY 2

A. There are high degree of failures in lupus clinical trials because of these challenges:

outcome measures are not being “coded” or “scored” correctly during trials, this in-turn makes it very hard to quantify the results

because lupus patients are “heterogeneous”; meaning one lupus patient from the other has such a varying degree of symptoms, it is extremely difficult to define and recruit the appropriate “kind” of lupus patients that would then make the trials effective

because researchers are dealing with the immune system, and nowadays A LOT of immune receptors that are involved and play a role in Lupus patients have been identified, it is very difficult to pick which of these receptors or biomarkers should be followed up as part of the study

because of these challenges, a lot of lupus trials – even the ones who have resulted in very positive outcomes (e.g. new drug trials), would eventually show “no significant effect” during efficacy stage (Phase III) and many trials have to be abandoned because of these reasons.

To learn more on what researchers have to go through before a ‘drug’ can be approved and sold to public – phases of clinical trials

a better brighter day

B. Dr. Daniel TM Chan from Hong Kong gave a lot of very interesting summary and insight on his expertise in lupus nephritis (renal lupus) management:

different combination of drugs are used by rheumatologist and kidney specialist (nephrologist) for patients who has kidney inflammation.

He suggested that doctors should think about the short term vs. long term effects on different drug treatments on the patient’s overall health before choosing the appropriate treatment.

He posed the questions whether a positive short term outcome outweighs the long term survival rate of patients with renal inflammation.

For example, in patients who have high degree of kidney involvement, high dose of steroid is used. Steroid, although very effective in reducing inflammation, increases organ damage in the long term. So, caution and close monitoring is crucial in managing lupus patients with kidney disease.

Some of medications used to treat Lupus Nephritis also causes “nephrotoxicity” – overtime causes scarring to the kidney tissues. So, there is very strong incentive for patients and doctors to closely monitor the progress and effect of treatments.

Mycophenylate Mofetil has been shown to have a more effective result in Asian Lupus Nephritis patients when compared to Azathioprine.

Tacrolimus is shown to be a safer drug to be used in lupus patients with nephritis who consider pregnancy. This medication does increases risk of nephrotoxicity. Baseline renal function must be checked and followed up regularly during the use of this medications.

Melbourne Convention Centre from the other side of the Yarra River bank

C.In the effort to make sure that better clinical trial designs can be created to prevent less trial failures, the doctors and researchers have now put more attention to creating more precise guidelines. To do this, they also have to do more RESEARCH!!!

For example:

how should do we define “REMISSION”

different definition so far including those from the DORIS study, DORIA study, Hopkins study. (check here for a bit of summary)

should “LOW DISEASE ACTIVITY” be used as a measure of “successful treatment outcome” in drug trial studies?

some weird artsy-fartsy sculpture with no explanation… i tried to figure out what it was for, but was unsuccessful… so, now for you to ponder…

D. LUPUS & SKIN : no drug approved for SLE Skin lesion therapy

4 main categories: acute (e.g. butterfly rash), subacute (rash that looks like psoriasis), chronic (discoid lesion on skin and scalps which often lead to scarring), intermitted (lupus tumidus lesion – lesions developed on areas exposed to sun).

infections that leads to pulmonary infection have highest contribution to death in SLE patients

patients who are on immunosuppressant drugs are not recommended to have LIVE VACCINE (such as the varicella zoster virus).

Please consult your GP and specialist at the very beginning of your symptoms so appropriate treatment can be given.

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Important note: It is very important that you do not let these information scares you. Read and do your own research into a reliable scientific resources and THEN discuss with your health provider what you have learned. There are A LOT of information out there that can be misleading. My goal is to provide a summary that everyone can easily read and understand, but I have a limitation in inserting the background papers on each of these data in the summary.